Search

Introduction: Palliative and End of Life care (PEoLC) in the United Kingdom (UK) is increasingly being reported as inadequate. This is occurring amidst a wider backdrop of health and social care systems facing unprecedented pressure, particularly as they recover from the long-term impact of the COVID-19 pandemic. This study aimed to explore the barriers to PEoLC faced by those providing and receiving care in South-West England (UK). This region of the UK brings its own set of unique challenges due to its rural and coastal location, an aging population, and a historical lack of research. Methods: An exploratory study was conducted which involved patients, families, and professionals who were providing and receiving PEoLC. A total of 13 qualitative focus groups were held with a total of 63 participants; 45 were health and care professionals and 18 were people toward the end of their life, family/carers and people who were bereaved. Results: A range of barriers were identified for those providing and receiving PEoLC services. These were a lack of specialist palliative and EoL care resources (particularly in out-of-hours care); poor communication, collaboration and co-ordination across providers; inequalities in the access and provision of care; the impact of the COVID-19 pandemic; and a reluctance to have conversations about death and dying. Conclusion: This study brings together the voices of patients, family, and professionals from different settings in a geographical area of the UK. Understanding their experiences and perceived barriers to care is key to being able to develop and transform care. Ultimately, there is a need for a collaborative and co-ordinated approach across both practice and research, working toward what is important to those providing, and most importantly, those receiving care at the end of their lives. [ABSTRACT FROM AUTHOR]

In this paper, we examine the use of creative methods for understanding the experience of young adults aged between 16 and 30 years over a year following a cancer diagnosis. Exploring the renegotiation of identity, the narrative, longitudinal research design of the study demonstrated the unfolding process of the narrative work between participants and researcher. We used a combination of visual, spoken and reflexive psychosocial approaches to understand emergent narratives, many of which do not always find symbolisation in language. Our methodological approach focused on the difficult and sometimes 'unspeakable' nature of the young adults' narratives, demonstrating the importance of different modes of communication in articulating complicated relations with uncertain futures. In this respect the links between narrative, social action and the imagining of possible futures are precarious. In this paper, we explore how untellable issues were explored, and the challenges of doing so.

Background: There are 14,228 care homes in England with a population of approximately 372,035 residents, many of whom are living with frailty or multiple and complex comorbidities. Policy and international literature advocate that care homes provide high‐quality person‐centred care that meets each person's specific needs. This study aims to provide an exploration of person‐centred care in care homes in the South West of England from the perspective of all those involved. Methods: A qualitative multiple case study design was used across seven care homes in a region of South West England. Semistructured interviews were conducted with 61 participants (residents, family and health and care professionals). Nonparticipant observations were undertaken in communal areas to understand the practices and cultures of the care homes. All data were analysed using reflexive thematic analysis. Findings: The findings are presented as six themes, they are adjusting to the transition into a care home; people at the centre of care; the place we call home with the people we call family; working across the boundaries of care; supporting, valuing and empowering care home teams; and managing complex and challenging moments of care. Conclusion: This study demonstrates a whole system understanding of person‐centred care across seven care homes. The main components of person‐centred care appear to be relational. These relationships take place in cultures and systems that are complex and challenging with care boundaries that need to be navigated. Navigating these care boundaries requires a people‐centred care approach built on partnerships and mutual respect. [ABSTRACT FROM AUTHOR]

Context: Observation is an increasingly popular method for care home research. However, there are challenges associated with the use of this method in this context. As researchers, what we bring, what we do, and what we leave behind when using this method can have a significant impact on the lives and work of people in care homes. Perspective: Drawing on the experiences of two research teams, we share real-world examples of the ethical, methodological, and practical concerns when using the non-participant observation method in a care home context. Four key areas for observational research in care homes are considered: privacy and confidentiality; managing consent; observation activities and the role and skills of the researcher; and sensitivity, reflexivity, and relational aspects of observational research. We offer examples from our work to guide researchers on: i) making a case for ethics; ii) the observational 'gaze' (or focus); iii) including people who lack capacity; iv) addressing concerns about care or practices; v) the role of the researcher; and vi) addressing observational sensitivities. Implications: This paper highlights the opportunities and challenges of the non-participant observation method for care home research. In particular, we highlight the unique contextual and 'people' factors for researchers to consider. Our paper addresses a significant gap in the existing literature. It will be of interest to researchers world-wide, generating discussions that will support the research community to undertake research that appropriately uses observational methods to address questions that matter for the sector and to generate high-quality evidence with the potential to benefit those living and working in care homes. [ABSTRACT FROM AUTHOR]

Background: Guidance and policy on personalised (or person‐centred) care of older people living in care homes advocates that all residents must have their preferences considered, and that all care provided must be reasonably adjusted to meet the person's specific needs. Despite this, research that considers what matters to residents in terms of the care they receive is limited. Objectives: Our review aims to explore care home residents' lived experiences of personalised care and understand what really matters to them. Methods: Six electronic databases (CINHAL, Medline (Ovid), Embase, PubMed, Web of Science & PsychInfo) and Google Scholar (grey literature) were searched to identify qualitative studies relating to personalised care in care home settings, which also included resident (voices) quotes. The literature review and synthesis are reported using eMERGe guidance. Results: Fifteen studies met the inclusion criteria for our meta‐ethnography. Four conceptual categories (the challenge of fitting into institutional care, the passing of time, holding onto a sense of self and a desire to feel at home) and two key concepts (creating a culture of purposeful living and caring and forming and maintaining meaningful & empowering relationships) were identified. Finally, a conceptual framework of understanding represents what personally matters to residents in terms of their care. Conclusion: Our meta‐ethnography, guided by residents' lived experiences of personalised care, offers a new perspective of what personally matters to residents in terms of the care they receive. The conceptual framework of understanding highlights the importance of moving from an institutional position of doing for residents to a person‐centred position of doing with residents. Implications for practice: Our findings highlight the importance of understanding the differences between personalised and person‐centred care for policy and practice. Further considerations are required on how this might be applied through nurse and care home professionals' education and work practices. [ABSTRACT FROM AUTHOR]

Background: England's South-west Peninsula is largely rural, has a high proportion of over 65s, and has areas of rural and coastal deprivation. Rural and low-income populations face inequities at end of life and little is known about the support needs of rural, coastal and low-income communities. Objectives: To understand how to foster community support for dying and grieving well, a regional, multi-sectoral research partnership developed a community engagement programme to explore experiences of seeking support, issues important to people and the community support they valued. This article shares what people told us about the role that communities can play at end of life, and reflects on learning from our process of engaging communities in conversations about dying. Design and methods: A programme of varied community engagement which included: the use of the 'Departure Lounge' installation and four focus groups with interested individuals in a range of community settings; the co-creation of a 'Community Conversation' toolkit to facilitate conversations with individuals with experience of end-of-life care and their carers with Community Builders; a focus group with Community Builders and a storytelling project with three bereaved individuals. Results: People valued community support at the end of life or in bereavement that offered connection with others, peer support without judgement, responded to their individual needs and helped them to access services. Creative methods of engagement show potential to help researchers and practitioners better understand the needs and priorities of underserved populations. Collaboration with existing community groups was key to engagement, and contextual factors influenced levels of engagement. Conclusion: Local community organizations are well placed to support people at end of life. This work highlighted the potential for partnership with palliative care and bereavement organizations, who could offer opportunities to develop people's knowledge and skills, and together generate sustainable solutions to meet local need. [ABSTRACT FROM AUTHOR]

Aims: To examine the organisation of the nursing workforce in intensive care units and identify factors that influence how the workforce operates. Background: Pre‐pandemic UK survey data show that up to 60% of intensive care units did not meet locally agreed staffing numbers and 40% of ICUs were closing beds at least once a week because of workforce shortages, specifically nursing. Nurse staffing in intensive care is based on the assumption that sicker patients need more nursing resource than those recovering from critical illness. These standards are based on historical working, and expert professional consensus, deemed the weakest form of evidence. Methods: Focus groups with intensive care health care professionals (n = 52 participants) and individual interviews with critical care network leads and policy leads (n = 14 participants) in England between December 2019 and July 2020. Data were analysed using framework analysis. Findings: Three themes were identified: the constraining or enabling nature of intensive care and hospital structures; whole team processes to mitigate nurse staffing shortfalls; and the impact of nurse staffing on patient, staff and intensive care flow outcomes. Staff made decisions about staffing throughout a shift and were influenced by a combination of factors illuminated in the three themes. Conclusions: Whilst nurse:patient ratios were clearly used to set the nursing establishment, it was clear that rostering and allocation/re‐allocation during a shift took into account many other factors, such as patient and family nursing needs, staff well‐being, intensive care layout and the experience, and availability, of other members of the multi‐professional team. This has important implications for future planning for intensive care nurse staffing and highlights important factors to be accounted for in future research studies. Implications for Nursing Management: In order to safeguard patient and staff safety, factors such as the ICU layout need to be considered in staffing decisions and the local business case for nurse staffing needs to reflect these factors. Patient safety in intensive care may not be best served by a blanket 'ratio' approach to nurse staffing, intended to apply uniformly across health services. [ABSTRACT FROM AUTHOR]

Aims: To understand how COVID‐19 affected nurse staffing in intensive care units (ICUs) in England, and to identify factors that influenced, and were influenced by, pandemic staffing models. Design: Exploratory qualitative study. Methods: Semi‐structured, online interviews conducted July–September 2020 with regional critical care leaders including policy leads (n = 4) and directors/lead nurses (n = 10) across critical care networks in England. Findings: The six themes emerging from the framework analysis illustrate how the pre‐pandemic ICU culture influenced ICU staffing models during the pandemic. Changes in staffing impacted on the workforce and the care delivered, whilst it was necessary to learn from, and adjust to, a rapidly changing situation. Variation across and between networks necessitated variation in responses. The overwhelming outcome was that the pandemic has challenged the central tenets of ICU nurse staffing. Conclusions: Pandemic nurse staffing models resulted in changes to ICU skill‐mix and staffing numbers. Factors such as the impact of nurse staffing on care practices and on the workforce need to be taken into account when developing and testing future nurse staffing models for ICU. The extent to which ICUs will return to former staffing models is not yet known but there seems to be an appetite for change. Impact: In common with many countries, nurse staffing in English ICUs was adapted to address surge requirements during the COVID‐19 pandemic. Findings highlight the challenge COVID‐19 presented to pre‐pandemic ICU nurse staffing guidelines, the impact on patient and staff well‐being and the potential legacy for future staffing models. Study findings have implications for ICU nurse managers, researchers and policy makers: nurse staffing models need to be adaptable to the local context of care and future research should investigate the impact of different models on patients, staff and health service outcomes. [ABSTRACT FROM AUTHOR]

Purpose: Low recruitment of adolescents and young adults in cancer clinical trials is widely reported and may be linked to limited improvements in survival. Research to date does not adequately explain all underlying reasons for poor trial accrual. This paper reports health professional perceptions of communicating with adolescents and young adults with bone sarcoma about clinical trial participation.Methods: This study used narrative inquiry. Findings are reported from thematic analysis of in-depth interviews with 18 multidisciplinary health professionals working in a supra-regional bone and soft tissue sarcoma centre.Results: Participants described professional expertise, the development of specialist knowledge and skills and strategies used to develop trusting relationships with adolescents and young adults with bone sarcoma. These factors were perceived to facilitate communication about clinical trial participation. Emergent themes were having credibility through expertise of the team, developing specialist communication skills through reflection on practice, having inclusive approaches to education and training about clinical trials, individual communication styles used to form trusting relationships, using a patient-centred approach to connect with adolescents and young adults, creating time needed to form trusting relationships and effective team working.Conclusions: We aligned findings of this study with characteristics of patient-physician trust and provide a basis for transferable recommendations. Our findings can be used to inform the development of age-specific, specialist communication skills and highlight health professional education needs about clinical trials. Additional research is needed to explore which elements of team working optimise improved clinical trial participation, in what contexts and why. [ABSTRACT FROM AUTHOR]

Objectives To understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16-40 years and how this might affect care. Design We used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care. Setting Three cancer centres and associated palliative care services across England. Participants We aimed for a purposive sample of 45 people with cancer from two groups: those aged 16-24 years for whom there may be specialist cancer centres and those 16-40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16-24 years and 30 people 25-40 years diagnosed with cancer (carcinomas; blood cancers; sarcoma; central nervous system tumours) with a clinician-estimated prognosis of <12 months along with nominated family carers and healthcare professionals. 19 bereaved family members and 47 healthcare professionals participated in workshops. Results Data were available from 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals; and financial concerns. Conclusions Current care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16-40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services. [ABSTRACT FROM AUTHOR]

To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16-40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of 'self' and nonfacilitative services and environment. Preferences included a family-centered approach to care, honest conversations about end of life, and facilitating normality. There is little evidence focused on the end-of-life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore, it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end-of-life experiences and preferences for young adults with cancer and their informal carers. [ABSTRACT FROM AUTHOR]

Background: Patient experience is increasingly used as an indicator of high quality care in addition to more traditional clinical end–points. Surveys are generally accepted as appropriate methodology to capture patient experience. No validated patient experience surveys exist specifically for adolescents and young adults (AYA) aged 13–24 years at diagnosis with cancer. This paper describes early work undertaken to develop and validate a descriptive patient experience survey for AYA with cancer that encompasses both their cancer experience and age-related issues. We aimed to develop, with young people, an experience survey meaningful and relevant to AYA to be used in a longitudinal cohort study (BRIGHTLIGHT), ensuring high levels of acceptability to maximise study retention. Methods: A three-stage approach was employed: Stage 1 involved developing a conceptual framework, conducting literature/Internet searches and establishing content validity of the survey; Stage 2 confirmed the acceptability of methods of administration and consisted of four focus groups involving 11 young people (14–25 years), three parents and two siblings; and Stage 3 established survey comprehension through telephone-administered cognitive interviews with a convenience sample of 23 young people aged 14–24 years. Result: Stage 1: Two-hundred and thirty eight questions were developed from qualitative reports of young people’s cancer and treatment-related experience. Stage 2: The focus groups identified three core themes: (i) issues directly affecting young people, e.g. impact of treatment-related fatigue on ability to complete survey; (ii) issues relevant to the actual survey, e.g. ability to answer questions anonymously; (iii) administration issues, e.g. confusing format in some supporting documents. Stage 3: Cognitive interviews indicated high levels of comprehension requiring minor survey amendments. Conclusion: Collaborating with young people with cancer has enabled a survey of to be developed that is both meaningful to young people but also examines patient experience and outcomes associated with specialist cancer care. Engagement of young people throughout the survey development has ensured the content appropriately reflects their experience and is easily understood. The BRIGHTLIGHT survey was developed for a specific research project but has the potential to be used as a TYA cancer survey to assess patient experience and the care they receive. [ABSTRACT FROM AUTHOR]

Resilience in nursing medication administration practice: a systematic review with narrative synthesis., Objective: Little is known about how nurses adapt medication administration practices to preserve safety. The capacity to adapt and respond before harm occurs has been labelled 'resilience'. Current evidence examining medication safety largely focuses on errors and what goes wrong. This review aimed to synthesise evidence for the application of resilience principles and practices in nursing medication administration., Design: The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guided the review, which was registered with PROSPERO., Data Sources: MEDLINE, EMBASE, PsychINFO and CINAHL databases were searched from 14 August 2020 to 1 January 2021 for English-language studies., Methods: A systematic review of empirical studies of any design relating to resilience and safety in nursing medication administration in the inpatient setting was conducted. Methodological quality was appraised using the Mixed Methods Appraisal Tool. Data were synthesised thematically., Results: Thirty-two studies with a range of methodologies of mostly good quality met the inclusion criteria. Eleven interventional studies included two that evaluated the effectiveness of education interventions and nine exploratory studies with outcomes showing the impact of an intervention designed or examined to build resilience. Twenty-one non-interventional studies showed how resilience principles are put into practice. Only three studies explicitly named the concept of resilience. Resilient medication administration strategies result from five triggers., Conclusions: Nurses' resilience practices were found to be responses to identified trigers that threaten safety and productivity. These were often short term, real-time proactive adaptations to preserve safety, compensating for and responding to complexities in the modern healthcare setting., Prospero Registration Number: CRD42018087928., Competing Interests: Competing interests: The authors declare no competing interests., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)